The DMV and Me

The DMV and Me

You’ll recognize the plot at once. It’s a story as old as mankind and a path virtually all of us must tread.  I’m talking about getting older; losing it; knowing what needs to be done but not being able to do it like we used to.  Of course it doesn’t happen just once but again and again.  Piously saying “I’m only doing it for your sake” the nurse, the boss, the wife, the friend each, in turn takes away a key, hides a bottle, revokes a privilege, or issues an ultimatum.  For some of us, such as those with Parkinsons, the path is long and the take-aways are many.  For those who die of sudden massive heart attack or rapidly spreading cancer, there may not be time enough to understand and appreciate the losses.

For me and the plot of this little tale, the events began with discussions of when older people should stop driving.  Discussions at church, work, support groups. Everyone has a personal anecdote or opinion.  I noticed some people who would find it more convenient to drive their own car rather than ride with me.  When directly asked these people wouldn’t say they found anything wrong with my driving.  Some of the people in the support groups I participate in proudly announced one week that they had voluntarily given up driving only to admit sheepishly the next week that there were just times when he or she HAD to use the car.  I began to wonder earnestly how I would handle the crisis.

I expected my crisis to happen in July since my drivers license needed to be renewed then, I thought I had dodged the bullet when I successfully applied on-line for the renewal and received it without question.  According to the paper I was good to go until 2018.  Two months later and over a week after my birthday, came a letter.  Out of the blue the DMV informed me that they wanted to carry out a reexamination of my ability to drive a motor vehicle.  It was, they informed me, for “my safety.”  From then on, everything the DMV did was “for my safety”..

The first requirement was to get my doctor to complete a 10 page medical summary. This was more extensive than I ever recall completing.  Fortunately I am a Kaiser healthplan participant and their Customer Services department knew exactly what to do.  Shortly after the DMV received the medical record I received notice of my in-person reexamination appointment.  Because the letter didn’t say exactly what was going to be reexamined, I called. A technical assistant assure me that the letter specified which test or interview I was being asked to attend.  When I assured her my letter did not, she agree to pull up her records.  “Well,” she equivocated, “when they don’t say which one, I guess that means you’ll get all of them.  That included a written test and a modified driving test.  I would also be interviewed for 30 minutes by a hearing officer to determine my state of mind and general cognitive abilities.  To this point it was all pretty low-key with the idea that I may have to have a “restrictive license” or take a remedial course. After all they’re only thinking of me.

It appears that some people do well enough at this point that their license is stamped “OK” and they go on their merry way.  But I was just beginning.  I got to take the dreaded “driving test”.  The pressure ratcheted up. 

On the test date, I felt slightly keyed-up but not uncomfortable.  The examiner was pleasant.  The day was beautiful.  I was shown the test and told that I could miss 20 of one group of maneuvers or only ONE of a small group of critical errors.  The pre-check of my car and pulling out of the DMV parking lot went well.  As the test progressed, I grew more and more relaxed.

Pulling into the debriefing parking lot, I sighed in relief thinking I had easily passed the test.  Boy, was I wrong.  The examiner lit into me like I had run over 5 kittens and a baby girl.  According to her, in less than 3 minutes I had committed over half the “critical errors” possible and 5 more than necessary to fail the test. When I calmed down enough to hear what she was saying it boiled down to my not looking over my shoulder before lane changes and turns.  I was missing the blind spot.  I certainly felt I had been blind sided.  I made an attempt to explain my practice and the controversy regarding blind spots.  That did not help my case as the examiner now felt I wasn’t even TRYING to pass the test.  The next day, as expected I got a letter saying my driving privileges were suspended immediately.

Feeling like I had been sucker punched, I found it difficult to focus on my life, deal with my Parkinsons, meet my obligations to others.  Fortunately, I have the most wonderful wife in the world who had already made plans for dealing with this crisis.  She had introduced me to a man 6 or 7 years my junior who helped me copy and fold the church newsletter.  Where I needed someone to do the heavy lifting Dave was there.  Now Carolyn suggested that David could be my driver while we “sorted out this mess”.  I knew that “this mess” could go on for weeks, months, or even years.

David has medical problems of his own but also has a great attitude and a willingness to make things  work out.  Although he would be getting paid as a driver, it meant some significant sacrifice on his part. Instead of sleeping  until 8 or 9 each morning he had to get up at 6, eat breakfast, make his lunch, and ride a mile and a half on his bike to be ready to drive me to my scheduled activity.  That activity might be a 14 mile bike ride or collecting and counting the cash from the local library lobby used book sales or a half dozen other things I’ve gotten involved in.  Overnight David was essentially asked to volunteer for everything I had volunteered for.  But he came through.  So much so that in many cases no one knew there had been a change in my mobility. I stayed involved in all my responsibilities and activities.

With that pressure off, I could concentrate on getting my license back.  The friendly folks at the DMV were more than willing to schedule another driving test for me (although it was a month in the future) and they seemed absolutely delighted that I was interested in a Special Instruction Permit which allowed me to drive again as long as a driving trainer, licensed Occupational Therapist, or licensed driver over the age of 25 was in the car with me.  When I received my permit in the mail David found that his driving duties were reduced at least by half.  He had “graduated” from driver to instructor.  I checked out what training programs were available for older drivers particularly inexpensive or free resources on the Internet. I was especially interested in those areas where I had made so many serious errors – lane changes and blind spots.

The next three weeks actually went by quickly. It turned out that David was a silver lining in my stormy cloud.  Having David along with me also provided a welcome change of pace. But I paid the price in loss of privacy.  Sometimes I felt like I was in the middle of a logic puzzle with three canoes, three chickens, three cannibals and three missionaries trying to cross a river without anyone getting eaten.  For example, I usually take two older women to church on Sunday morning.  But I couldn’t pick  up the women until someone over 25 was in the car but David didn’t want to ride his bicycle on Sunday mornings so he had to have someone else pick him up and bring him to our house.  Then we had to juggle walkers and scooters and wheelchairs.

Two days before my second driving test my neurologist called to schedule a routine appointment  During this appointment the doctor (and Parkinsons expert) made several references to my not being able to drive as my condition develops.  He couldn’t have lowered y expectations more effectively if he had been hired to do that.  

The first time I took the driving test this summer I was confident and became more so until the examiner punctured my balloon.  This time I was nervous and became more so as the test progressed. On the other hand, this examiner was much more personable during the test than my first examiner. About 3 minutes into the test he said, “Mr. Loveridge, we’re humans, not owls.  We’re not expecting you to turn your head 180 degrees to see your “blind spot”.  Look just barely past your shoulder like this (he demonstrated).  But it’s good to see you’ve done your homework.”

When the examiner told me I had passed I was so shocked that I couldn’t think to ask what was next. .  I had only 5 out of a maximum of 20 driving errors and NO critical errors.  I didn’t dare ask if I had heard right. I had.  Still, I didn’t want to publish this until the actual stay of execution (set aside of action) arrived in the mail.  It came with a built-in disappointment – I am automatically scheduled for a review one year from now.

You Lost Your What!?

You Lost Your What!?

As much as I disliked my trach tube, I realized that it would keep me alive should my wind pipe decide to again tighten up and reduce my available air intake as it did the first of this year.  So it was a sort of love/hate relationship.  And because the tube was there day after day, sun or rain, day or night, I began to take it for granted.  Oh, I paid close attention to it every morning after my shower to see that it was clean and that the collar holding it in place was snugly secured. But the rest of the day I didn’t think about it so much.

Which is why I was so surprised and distressed when while driving to a chiropractor’s office yesterday afternoon, I felt something unexpectedly bounce against my chest.  I touched it with my hand, then took several seconds to realize that it was my trach tube. M tube had fallen out of its hole and was being held loosely by the other end of the collar.   I pulled to the side of the road and made a sincere effort to reinsert the tube.  But without lubrication and a decent look at the site, it was an impossible task.  Besides, I was under no stress or breathing anxiety.  When I got back home and called my doctor’s office his nurse advised that I should sit back and relax.  She would notify the doctor,  I called Carolyn.

Carolyn called the doctor’s office with a little more urgency in her voice.  She convinced the doctor to  see me and assess the situation.  We rushed over to his office about 3.5 miles away.  The doctor pushed a fiber-optic scope into my nasal cavity and down my throat.  He verified that my pharyngeal opening was larger than the (now absent) tube.   There was really no need to replace the tube as long as I wasn’t in distress. We were exactly 2 weeks early from seeing the doctor about taking the trach out anyway.

 The next 24 hours were a little nerve wracking as I got to find out what it was like to breathe just with our usual equipment. But all is well (deep sigh).

I'd know that face anywhere

You know the term "Aha! moment".  It's when you see something new to you and suddenly you wonder how the world has gotten along without it.  The first time I saw a spreadsheet on a PC.  The first time I saw sound manipulation on a PC.  The first time I saw 3D graphics on a PC.  These were Aha moments for me, moments when I realized I had underestimated the power of computers that could be carried in your arms if not your hands.

I had another Aha moment yesterday when I had my first serious encounter with Face Recognition Software, which I'll abbreviate FRS.  Like many of my Aha Moments, I didn't go looking for FRS.  I was looking for  a program to keep track of the thousands of pictures we have in our family collection.  I want something that is capable of tracking picture by content as well as location and file name - the whole who, what, where, why, etc.  This is one of those times when I want the computer to not just give me what I ask for but also what I meant to ask for.

As a start I Googled "photo album software free" and got a nice list of "10 best".  The number 1 listed program was not produced by the organization that produced the list - one good sign that the list was legitimate.  And the brief reviews of each of the 10 pieces of software correlated with the scores.  Another good sign.

I was surprised, though, that the first program, the highest recommendation was Google's Picaso.  I had installed that years ago but could never warm up to it.  Maybe Google had upgraded it a little, I thought.  Have they ever!.

I didn't bother downloading the program although that would have probably been the best thing to do.  But Picaso noticed right away that I didn't have the latest and recommended that I update. I did.  Shortly the requested update was downloaded and installed and the program opened  up.  I was shocked to see dozens of my picture folders listed and hundreds of my pictures.  I hadn't asked for that.  The first thing I learned about Picaso is that it is one of  those programs that makes all kinds of assumptions about what you want and starts doing them, letting you change your mind and the  program settings later.  That's probably what turned me off about it when I first installed it.  This time I let it go.

I let it go because in front of my eyes I was seeing what you've seen on TV and theater shows where a face flashes on a screen followed by a dozen others and we see the computer's thought process in selecting a good match from its database.  The computer was building a database of my pictures as I watched.  It lacked the names or "tags" to go with the separate piles it was making but that didn't slow down the matching process.  I clicked on a picture of me.  The computer instructed me to key in who that was. I entered my name and verified that it was a new person for this database.  Pictures flashed around the screen and I was presented with 15 or 20 more pictures of me - some identical to the first, most slightly different.  I was instructed to X out those pictures that weren't Arnold Loveridge and confirm those that were.  Another dozen or more were added to the page.  Like playing a game of "Fish" the computer was offering me pictures that it "recognized" as Arnold Loveridge.  I was witnessing FRS.

Voice Recognition Software translates the spoken word into the written word.  But it has to be taught how you say things.  Likewise FRS translates faces into names.  But it has to be carefully taught.
With 98,427 catalogued faces, my computer's database has identified so far 1,449 groups, each of which may be a separate person.  So far I've identified 59 people, some with over 2,000 pictures in my computer, some with less than a dozen.  I have a lot more to teach the computer. And I suspect it has a few more surprises for me.

Here is an example of a picture analyzed by Picaso which identified each of the faces and then matched them with names in its database.

And here's a picture I retrieved by asking for one with my older brother Bernell and me in the picture.  The program even looked back several decades to make the match!

Dreams + Ability <> Success

This blog entry started out quite differently.  It was going to be the story of how local businesses help each other succeed.  And it really is gratifying to see how local businesses help each other.  But, in the end it was just not enough to overcome design flaws and incomplete plans.

It all started when we decided it w ould be helpful to have a bike rack on our Highlander so that we could transport Carolyn's bike as well as my trike if we wanted to go on a biking expedition that started anywhere but home.  Now that I'm riding my tricycle 3 or 4 times a week such a trip isn't out of the question.

I dropped into our local Sport Chalet which indeed had several bike racks.  However, the best one according to the sales rep was not currently in stock.  Besides, he said, I probably should talk to the experts at Rack and Road.  I couldn't believe my ears.  An unsolicited referral! Then he offered me a free license plate holder (advertising Sport Chalet, of course) which I took since the original one from my dealer was falling to pieces.

Next, Carolyn and I dropped in at Rack and Road and were told me needed an additional hitch receiver.  They didn't have that but referred us to Cole Fabrication, a local firm specializing in small welding jobs and whose motto is something like "If you can dream it, we can build it."  Shortly after we arrived and explained our situation, the lead worker Larry was discussing with the owner Jake the various potential solutions. They quickly weeded out the impractical solutions and Larry began preparing the pieces.

I have always been fascinated by welding, even to the point of buying little welding kits but never successfully welding anything useful.  That's why I'm in awe of someone like Larry or Jake who can make the whole process look effortless.

Within a couple of hours we had a new hitch receiver and were headed
 back to Rack & Road to finish our project.

We had had a good look at how small town businesses work together to provide big business customer service.

Unfortunately, here the story falls flat. To this point no one had bothered to actually check out the structural implications of a bike rack on the folded up chair lift.  For some reason the designers of the chair lift had included a spring mechanism that is bypassed when actually carrying a chair or scooter.  But in the folded up position the spring acts somewhat like the spring in a pogo stick.  When mounted as we had all envisioned, the bike would amplify each bump in the road making the car unsafe to drive, scaring the hell out of anyone following, and probably eventually ripping the lift off the back of the Highlander.   We didn't let it go that far, of course.  We returned the bike rack for full credit as it had not been used.  There was no  undoing of the welding, of course.  But hopefully we all learned a lesson about thinking things ALL the way through.

Long term illness

The problem with a long-term illness is that it is, well, long-term.  Days, weeks, and even months go by without any significant changes or mileposts that could indicate improvement or (dreadfully) deterioration. For instance, I have Parkinsons Disease.  I was diagnosed six years ago and have long ago come to terms with the idea that I’m never going to be “cured” from PD.  I have had and may still have ups and downs But Parkinsons has become a fact of my life.

The swelling (edema) in my throat especially the wind pipe, which sent me to the hospital twice earlier this year now Is likely to become a long-term illness.  This week I had appointments with my throat surgeon and two consultants concerning the long-term course of my problem.  Their short consensus "lower your expectations and you won't be disappointed:. Apparently my throat is showing some progress but not as much as we all would hope and it is premature to operate further or pull out my trach tub and G tube. I definitely have a passage through my windpipe so we're making progress. That means I'm in a "safe place" that should keep me from another crisis admission to the hospital even if the throat edema should start acting up. Basically all the doctors said the best course of action is "wait and see". Timeline: expect as much as a year and don't be surprised if that gets extended indefinitely.

As one of my friends told me when I said that I just want to get back to normal, "Face it, Arnold, for you this is the new normal."  So any time you want things to get back to normal all you have to do is define the current situation as Normal!

Well, at least that's the last ...

It's hard to believe that I've reached that delightful age when I can start beginning sentences with the phrase "Well, at least that's the last ..." as in "Well, at least that's the last time we'll need to put a roof on this house."  The shingles we used are rated 50 year lifetime but even if we only get 30 years out of them, I'll be 98 and probably won't be thinking too much about the roof.

Regarding the roof, we actually did it right this time - getting all the bids in a timely manner, checking out licenses and referrals, giving ourselves plenty of time to look around the neighborhood and city for comparable roofs, and not waiting until the rain is  pouring through the ceiling to sign a re-roofing contract!  After each windy day we canvassed the yard to see how many shakes had been blown off the roof.  We saw a noticeable drop right after Carolyn got on the roof (in the middle of a windstorm) and nailed the ridge line down.  But this year we started seeing the occasional shake on the ground after a storm so we thought the time was arriving.

The quotes we got were all in the same price range and about the same as what we paid for the first house we bought in Long Beach in 1970.  We have been getting quotes for the past five years, noting how some of the contractors didn't even last that long.  When we finally decided to move ahead, we had to wait 3 weeks to get on the contractor's schedule.  Then they moved fast.


The old shake roofing was removed and all remaining wood securely nailed down and replaced if necessary.












































Plywood was  laid down next on the entire roof and covered with roofing fabric (tarpaper).  That took a little less than 2 days.






























The contractor made quite a mess during the day but cleaned up everything before winding things up for the day.  The crew  varied between 1 and 6 people at a time.  it sounded like we had upstairs tenants learning how to line dance.







































A little over a week after they started, the job was finished.  The workers disappeared.

An interesting note is that the law (local? statewide?) now requires that a re-roofer ensure that as part of the scope of work, a home be equipped with a working smoke detector and a working CO detector.     I thought we had signed a statement to the effect that the contractor had complied but for some reason it wasn't with the rest of the papers when the inspector made his final inspection of the job.  So I answered the doorbell and answered the inspector's question about the necessary detectors.  Then I made a flippant comment about wishing I had checked out the job myself  but with my walker I didn't get on many roofs.  The inspector chuckled politely then added, "Well, you don't need to worry about this job.  Zimmerman always does excellent work."  I thought that was a great unsolicited comment.

Arnold's health notice (5/3/13)....

Arnold's health notice 5-3-2013:

Two weeks ago I had some minor surgery performed on my pharynx in an attempt to reduce the amount of "redundant" tissue which had sent me to the emergency room twice earlier this year and was the cause of my 19 days in the ICU or Telemonitoring Unit in January and February. The surgeons were cautious, conservative, not wanting to take too much tissue and not knowing how my pharynx would react to the surgery. At the conclusion they promised to look over the results in two weeks and determine the next step to take. Today was that promised observation and review.

The result - disappointment.

My throat continues to show redundant tissue, inflamed and waving in my breaths like strings of pennants at the Grand Prix. Waving and telling me, "Go ahead, remove that breathing tube and we'll treat you to another stay in the hospital when you can no longer get a good lung full of air." My surgeon shakes his head and says we'll probably need to be more aggressive when we operate the next time but let's wait for another couple of weeks and see if it heals more. Neither of us thinks it will. But another review date is set - May 21. This time we'll invite the senior throat surgeon in the department to join us and give us the benefit of his opinion. I ask that we set a surgical date now rather than wait for May 21. The doctor agrees.

Two hours later the surgeon calls. In setting up the surgical date he has found a "pharynx specialist" in the system and he'd like me to be evaluated by this man. l agree, of course. I don't know whether that will speed or delay the process but having more information can't be a bad thing, can it?

Tuesday, May 7, is the consultation date with this new specialist. Look for the next installment then.

Arnold

Arnold's health notice

Spoiler Alert: the following is an update on my health condition, a subject which has probably been given way too much coverage in the past three months.  The bottom line is that I’m doing well and, following currently  planned treatments, expect to be as healthy as one can reasonably hope for a 68 year-old with Parkinsons.  You can now comfortably skip the rest of this essay.

When I last reported, the life-threatening constriction of my pharynges  which was responsible for my 19 days in the hospital during January and February was still a puzzle to my doctors.  The constriction was possibly the result of infection, pneumonia, or allergic reaction to a medication.  A trach tube was placed to bypass the obstruction and the tube remains in place, an uncomfortable inconvenience.   While one part of me wants that out NOW, another part of me says it’s a small price to pay to keep me from another emergency admission and the possibility that I won’t make it in time he next time.  I also have a direct gastric feeding tube in place should my throat become so constricted that I cannot eat or drink normally.

Yesterday, my head and neck surgeon fed a scope into my right nostril and down to the problem area in my windpipe.  Comparing that to the way I looked last month and the month before, he recommended laser surgery to remove  “redundant posterior pharyngeal mucosa” loose flaps of tissue that appear to serve no purpose except make it more difficult for me to breathe.  Instead of having a wind pipe that is one inch  in diameter, I have one that in places is barely the diameter of a drinking straw.   When aggravated or irritated, even this small opening begins to close up. 

The surgery is scheduled for this coming Friday, April 19, around mid-day.  As currently planned, it will be on an outpatient basis.  That means no overnight stay in the hospital.  For the first couple of days following surgery, I will likely need to eat through my stomach tube.  Two weeks following surgery, if the airway has been sufficiently cleared and enlarged, the trach tube can be removed.  Yayyyyyyyy!!

A Place Called Normal

So I've been home now for 3 weeks.  This experience should be comfortably behind me, a part of my past.  Why, then, do I find that I am still caught in the complex web of healthcare?

Well, for one thing I still have a hole in my throat with a tube (trache) sticking through it.  Every morning I am reminded that I have to clean around the tube, change the dressing, and put in a new inner lining  in the tube.  I have to cap off the tube to prevent water coming in while showering and cap it with a different cap in order to speak without plugging the ceiling hole.  I worry that the stiff tube will take on water somehow and I could become waterlogged.

Another insult to my body is the G-tube sticking out of my stomach.  Just like the trache, this bummer tube reminds me that this is my third try to get it right trying to swallow.  If I begin to have breathing problems again, I will need to receive nourishment by g-tube or n-g tube.  Since I have already removed two G-tubes and more than 1 nasal gastro tube, my personal care physician is reluctant to remove this current structure.

My diet, while recently expanded to include almost everything I care to eat, is still restricted.  I'm to eat mostly soft foods and food with uniform consistency which makes it is easier to swallow.  Of course in addition to the precautions I take when I shower I have to watch how I change my clothes that I don't mess up the wounds.  Swimming is out of the question.

And how long does this all last?  Could be days, weeks, years.  The double hospitalization makes everyone a bit nervous.  If Dr. A says it should be okay to pull everything out and call me cured, and things go bad again, Dr. A will feel a personal loss of status.  One or two doctors have used "end of the month" in their reports making me think that was a sort of "out of the air" projection made in one of their case management meetings.  Whatever the magic date is, I don't have much of a choice but to wait and do all my exercises 

Follow-through

There used to be a time when patients bounced back and forth from home to hospital or from home to hospital.  Sometimes it got so bad that patients who needed almost no care were occupying some of the most expensive hospital beds.  Home health care (HHC) done right can solve 90% of those problems.
For us, HHC seemed like just piece of a complicated system  - excellent in its own environment and totally cooperative in the big picture.

To begin with, they were involved early on with my case from an early notification from the hospital.  Plans were developed during my stay so there were no last minute surprises or crises.  Supplies were ordered, shipped, and even inventories.  In fact a training at the home was possible using 100% of our own product.  A charge nurse coordinated all the units that we dealt with.  She was blown over by Carolyn's organization with regard to meeting all the caregiver's challenge.  Because of personal schedules, this charge position was shared by two nurses.  Saying we were the "best" patient/caregiver she had seen in her 32 year career, the case was closed.  We had successfully transitioned.

Our next visitor from HHC was thw Physical Therapist..  An experienced therapist brought a person whom she introduced as her replaeement.  She would be retiring soon.  This older therapist was well qualified but, seeing that Carolyn had put things together well, decided to start micro-managing.  I was battling with my inner self  not to smack her with some of her suggestions.  Then my aide said something that rang a bell with the PT and she immediately changed gears.  From the "ongoing assistance" mode, she shifted to the "advise and close" mode.  She wrote up her observations along with one or two suggestions and told us she was closing her part of the case unless we had reason to insist she come more often. We didn't.

Like the PT, the Speech Therapist found things so well organized that they moved immediately into recommend and close mode.  I had difficulty focusing on their recommendations after they shared with us the results of my Modified Barium Swallow test.  If I couldn't improve my score on that physical test I would probably never be able to eat another normal meal.  I did pay close attention to some swallowing exercises they shared with us.

Going one better than the visitors who came only once was the Nutritionist who held a telep;hone consultation.  She asked her pertinent questions, answered ours, our and gave us referral numbers if something new came up.  She also gave us permission to skip our 3:00 am feeding.

All in all a good professional team who accomplished their mission then left us alone.

Hard to swallow

Darwin would have called it a tribute to evolutionism but scientists today describe it more as precarious.  Humans amoung many animals have a single intake opening for both our respiratory tract (trachea, lungs, breathing) and digestive tract (esophagus, stomach, intestine, eating).  Neither is more important than the other since we need both air and food.  So how do we decide what goes where?  In some cases we can decide.  For example, we can intentionally swallow air to prepare for a burp.  Or we can drink so sloppily that we get some liquid heading toward the lungs.  That could start around of terrible coughing or it could kill you. But most of the time you don't even think about it.

So who is in charge of this trick of directing esophageal traffic like a Parisian traffic monitor?  And, more importantly, what do you do when he falls down on the job?  Because that is what they're saying is my problem.  I'm a sloppy swallower.

The traffic cop is the team comprised by the tongue, pharynx, and epiglottis.  The nicer, more accurate term for sloppy swallowing is silent aspiration.  The serious part is a potential death sentence the other half a mere inconvenience.  Because of this problem I have been hospitalized twice this year for a total of 20 days in the Intensive Care Unit or the Step-Down ICU. Because of this I have two artificial openings in my body - a throat tube known as a trache and a stomach tube known as a G-tube.  In case I need air/oxygen immediately a tube delivering that can be inserted through my trache and into my lungs.   With my mouth preoccupied with oxygen, I can be nourished by sending liquid food through the g-tube. With the safety measures in place I can exercise and/or allow surgery to strengthen the little traffic copy and improve his performance.

The short term hope is that I can get my little traffic cop to work well enough that I can eat regular food with other people.  The long term hope is that a cure for Parkinsons Disease will keep the little guy working well past retirement age.

Discharge Plans

When the Discharge Planner showed up in my hospital room 4 or  days into my stay, I acted bemused but in reality I was impressed.  Bemused because it seemed like everyone else on the staff acted as if they expected me to spend my whole life in the hospital and I should stop entertaining thoughts of going home.  Impressed because I knew how far the healthcare industry had come.

Back in the 1970's when I was helping to run a 300 bed hospital, we had one person spending half her time trying to keep track of Medicare patients.  She was supposed to do "discharge planning" which at that time meant "finding a place that will take the patient when we can't do anything for them".  And that meant ANY place she could find and arm twist into taking the patient.

Now in my case the DP had investigated several choices and had considered my needs and resources.  The recommendation was originally for a nursing home so that I could have 24 hour/day nursing care available.  I "needed" around-the-clock feeding, supervision and medication.  Carolyn, knowing how much I would look forward to a nursing home stay, hustled around for two home health aides to provide the daytime supervision I needed when she was at work.

That made the DP's job easier but it didn't slow her down a bit.  At this point she shifted into "supply and equipment" mode.  Since my discharge plan required that I be tube fed through a G-tube she made sure that a month's supply of "tube food" was at our house and a smaller supply to take home.  She arranged for the appropriate healthcare staff set up appointments to train our home health aides and members of my family in maintaining our lawn AND me.

Right up until I rolled from my hospital bed onto the ambulance gurney, my Discharge Planner was calling and meeting with people involved in my transition care.  She made the often troublesome change look like a well-oiled machine leaving me to watch the discharge process.

Travelog

There are some events (meetings, conferences, vacations) that are so predictable that you can write up the historical record (minutes, proceedings, travelog) before the event concludes. On the other hand there are events which are so unpredictable or take so many unpredictable twists and turns that the final outcome doesn't resemble the initial plans at all.  I like to think my hospital stays should have been straightforward: admit, stabilize, diagnose, repair, discharge.  Here's what happened.

About eight weeks ago, I suffered an acute case of breathing distress.  Shriveled and shaking, thinking I could be on my last breath, I was wheeled into the Emergency Room where doctors and other professionals attempted to provide an airway to relieve that stress.  The combination of distress, medication, hospital procedures, and my mental state acted together to make me a difficult patient to stabilize and begin the process of diagnosis.      

A premature discharge led to a second admission, again for breathing distress.  I was finally convinced of the seriousness of my condition.  Hospital staff developed treatment alternatives that stabilized my situation and provided some long term solutions for breathing and eating.  This allowed me to be discharged again, this time with considerably more support in place.

The treatment plan continues to be developed as the current feeding by gastric tube seems a little drastic for the situation.  Likewise a diet consisting only of liquid artificial food, is less than ideal.   On the other hand, I am sleeping through the night and have had no further breathing distress.  My blood pressure, weight, oxygen intake and pulse all indicate that I'm in retiree's  paradise.

The hospital as a :__________

Each patient enters a hospital for his own reason.  For one it may be:

To die.  At one time this may have been the main function of hospitals.  Now we have alternatives like hospice;  Many people would prefer to die in more familiar settings surrounded by family and loved ones.  

To be operated on.  The hospital provides a controlled environment where surgical operations can be performed with the same precision and sterile field time and again.

To heal.  Hospital staff and volunteers feel their jobs are special because the healing process gives instant gratification.  They make a difference in someone's life.

To recover.  Recovery is accelerated to a large degree because of focused attention on the problems at hand.  Deviation from the healing process can be spotted and actions taken to counter them.

To learn.  One thinks of teaching hospitals, of course, but in a sense all the hospital patients are also students.  They learn from the procedures and processes practiced on them.

To be stabilized.  When a person's health is swinging wildly from good to bad or horrible to fine, it is difficult to treat with medicine, surgery, or alternative methods.  By the time the desired reaction may be expected, the patient may be off to another crisis.

To be born.  We mustn't forget that happiest of all the sections of a hospital, the maternity ward.  It isn't necessary to be born in a hospital but we hope there are reasons to chose that launching pad.


When I entered the hospital I felt like it was to die.  I knew it wasn't to be born.  Little did I realize just how many aspects of the hospital I would discover during my stay.

Arnold in Wonderland

Now I'm going to have to tread lightly in this area, mental perceptions and reality.  For one thing, my perceptions of the past six weeks differ from others more than I feel comfortable about (it's hard to write a story of you life when you weren't there.) and secondly, for much of my life I didn't accept the reality of non-reality.

I found books and papers on illusions and delusions to be highly entertaining but could not connect them to my reality or my firm foundation of truth being what is observed.  I believed there was an ultimate reality and that if we continued to refine our observation methods we would eventually discover this reality.  Furthermore, this reality could be shared - if I saw something it should be beyond question that you could see it, too, given enough time and equipment.

I no longer believe that is 100% true.  I have seen and heard entirely illusory evidence to the contrary.  During my hospitalization, I spoke and wrote things that are now no more than non-sense and scribbles.  I propounded marvelous arguments that, in the cold light of outside the hospital, are little more than blubbering.  My memory of an uninterrupted afternoon do not square with memory of others who witnessed a very disruptive Arnold Loveridge acting out of character.

Where do these phantom objects and guests come from? Are they coping mechanisms evolved through the ages?  Are they uniform in someway or can they be categorized?  Are they, like dreams, full of hidden meaning and open to interpretation by inspired men and women?  Or do they represent a sour pickle, spoiled milk, or a disagreeable dinner partner?  Do they have any use at all?

For example, I "learned" that a significant number of phantom images in my field of vision usually meant that I was using a large amount of creativity to make the observable "facts" fit the scenario I was experiencing.  In recognizing this, I was sometimes able to move the scenario closer to reality or terminate it entirely.  Oddly enough, to me it was comforting when we discovered that dellusions were not uncommon in Parkinson's Disease patients or that they are often created by the Intensive Care Unit.

A day of reckoning

Imagine that tomorrow morning you experience some chest congestion and coughing pain.  An hour later you are lying in the Emergency Room being told that you will never again be able to eat a regular diet.  Your meals for the rest of your life will be non-flavored liquids poured directly into your stomach through tubing surgically sewn there.  You are also told, in case you didn't know, that you are lucky to be alive and can thank your courageous wife and hard-headed kids for that.  The hospital staff should take their bows as well.

I'm interrupting my hospital narrative at this point to give some real-time information.  We began the day with 5 or 6 appointments on the calendar, knowing that a couple of them would have to be moved.  For example, I had an appointment with the head & neck surgeon at 8:30.  By the time we got there he had been called to urgent surgery.  So we rescheduled to 11:00 which was the time we were to meet with the home care speech pathologist.  She was kind enough to reschedule up to 9:30 so we could get her visit and still make it to the surgeon's office.

Speech pathologist
The speech therapist spent half her time discussing the nature of my illness as described by the report of the modified barium swallow that was done a couple of days before I left the hospital and (2) describing exercises that can help me deal with the illness.  I finally heard what some people have been trying to tell me for some time: I have a very serious, life threatening condition that may be curable or may be something I have to accept and live with by making modifications in my lifestyle.  For example, I may have to eat a liquid diet the rest of my life.  Or I may have to make a choice between a permanent tracheotomy or activities that call for heavy breathing such as biking.  The one bright note this morning is that the doctor has a couple of caps for my trache - one for showering and one for talking.  I no longer have to hold one hand to my neck to speak.

Head and neck surgeon
I expected a follow-up report on the surgeries already done including my trache (the g-tube was a different surgeon).  Instead, the doctor did another nasal probe to see the current condition of my airway.  Although the swelling had decreased significantly, there was still some in addition to the "redundant" tissue complicating things. This time the doctor recorded his scans on DVD.  He said they need to have some discussion in the department before he could make a recommendation regarding future surgery or removal of the trache.

Social worker
Another member of the Home Health Care team came to evaluate the services I need and how well along we are in meeting those needs.  She came away with the recommendation that we pretty much have all the community resources we need or have knowledge of how to access those we don't.  Case closed.

Primary Care physician
Wrapping up the team for the final appointment of the day is my primary care physician who has surprisingly little input but whose manner says it all.  Don't try to be an optimist on this one.  Even if you could learn to swallow well enough, its only temporary.  Parkinsons will catch up to  you.  And you will admit, life is still worth living.

I count my blessings.  Even with my math ability slightly impaired I know that
 (oodles & oodles)-1 still equals (oodles&oodles).  

Report Cards

When our children went to college I was a little bummed not to get a copy of their quarterly and semester grades.  Of course I could have it a condition of continued funding or housing but there was no official method of letting me know.

Of course report cards and other reporting mechanisms are not put in place to punish or reward.  They are simply part of the reporting system any managed process should have.  If something isn't measured and reported, it cannot be improved, changed, or corrected using normal management techniques.  If I don't know that one of my children is having problems with math I can't arrange help for him.  Likewise, who would want a healthcare system which gave out all sorts of advice prescriptions, and therapies but had no way of measuring the effectiveness of this effort of even how much of the ffort was used.

So it was with mixed feelings that I encountered the reporting system in our medical healthcare institutions   It is a mixed system with roots still in the "Doctor knows best" attitude. The younger, more progressive doctors like and use input from the patient and family. Where they use that input to involve the family in better and more accepted treatment plans, the patient is more likely to take prescriptions and use exercises  given.

There is also the practical matter of working with a responsible party.  I don't remember it, but I am told that during the initial part of my hospitalizations there were times when I was not only not responsible but I was actually physically threatening and certainly irresponsible.  There would have been no one for the doctors to work with in deciding MY fate.  I guess I should feel better knowing that our medical care system still cares enough, still feels patronizing enough to rat on patients - in a nice way, of course.  And for good cause, of course.

During my recent hospital stay, staff kept Carolyn updated about my progress, prognosis, prescriptions, expected therapies.  I was told who my nurse would be for that shift.

As our case managing Home Health Care Nurse was inventorying our prescribed equipment and going over all the procedures with us, she asked me whether I was "aware" of my medications.  It left no doubt in my mind as to who is reporting to whom.

My personal advance directive

So in the cool of the evening with no life threatening events immediately ahead of us, Carolyn and I complete an Advance Directive.  We are both in our late 90's.  Being the new generation we want to make sure we don't try to save each other beyond a reasonable number of times.  As the doctor bends closer to Carolyn's face so that he doesn't misunderstand her wish, Carolyn loudly answers, "Let the old Fart go.  Haven't you heard what he's been asking for the past 5 years?"

You see we picture the "Advance" part of the directive as the more important part and we place it far in the future.  When I was recently admitted to the Emergency Room, the people vying for my signature on the financial forms had their hands full getting past the ER clerks whose main interest was the Advance Directive. It was a slow afternoon and my trauma (not being able to breathe) was the best game in town.  So the whole ER staff minus those assigned to guard the doors or serve as ushers hovered around my bed while important, life altering decisions were made.  And there might have been some tense moments when a decision had to be made about whether my body was even worth keeping alive at all, not just for the 20th or 40th time.

Please don't get the idea that I want to second guess the decisions made by Carolyn and the hospital medical staff.  I probably owe my life to their making these decisions.  It's just that I'd been thinking of advance directives as pulling the plug time when it actually was used in a "damn the torpedoes, full speed ahead" fashion.  Once it was decided that Carolyn had permission and control over life and death decisions as to my mind and body, and it was explained to her that they could only work with clear cut directives (no maybe's or congressional joint resolutions) then things really went quickly.  They determined that I needed to breathe and that the best way to assure that outcome was to cut a 1/2 inch diameter hole in my neck and insert a tube that keeps the hole open.  Throughout the following days, decisions about my sleeping cycle, need for physical and chemical restraint, in general my whole life were decided.

In other words, my advance directive had been used and the direction was sure. The decisions did not come back to the table.  Of course the fact that I was no longer in a state of being able to make those decisions may have had something to do with that.

Let me be clear:

 THANK YOU, Carolyn, for making the brave decisions and commitments that allowed me to be here today.

Mark time with a puzzle, a photo, or a gala event

As I've indicated elsewhere, much of the first six weeks of 2013 are forever lost to me.  There are no deposits in my memory bank for those days and hours.  Of course one doesn't have to be hospitalized to experience that phenomenum - a boring car ride, poorly organize summer camp, or even a long conference can have the same effect.

The solution:  associate the time with a marker that can be remembered, documented and shared.

This 500 piece puzzle with the picture of a neighborhood carnival was begun when Lee came to stay with us for a week and was completed when RevaBeth and Keith visited.  And now that I have a picture of it I no longer even need the physical  pieces of the puzzle.

What markers do you use to capsulize time?

The plan, the plan, who's got the plan

It's a vague memory to be sure but I do have a memory of when life was simpler.  All you had to worry about toward the end of your life was how to write your will so that the good guys got your money and the bad guys got your bills.  Dyeing without a will was a sign of carelessness that would allow attorneys from anywhere to steal your heirs blind.

But these sorts of wills grew larger and larger to cover all contingencies.  We worried that we had missed somebody or treated someone unkindly.  And for the will to become effective and useful, you had to die. Sort of like having a gun to shoot that package of meat you just bought.  Attorneys quickly pointed out that a form predating the will, the Power of Attorney, would already take care of these items.  Specialized power of attorney documents began filling safe deposit boxes.

However, there was something more that was needed.  Upon death, your assets are frozen and your plans to support your family become another huge package of red tape.  The Living Will was developed to be a more powerful instrument   it could continue the family business, make dividing the family furniture less unpleasant, keep Sally in school, as well as assist in making final funeral arrangements.  The Living Will also became the mechanism to make family decisions regarding heroic life-saving measures, to allow the family time and space to decide when Aunt Mae's comatose body can be unplugged or how many more cardiac resuscitations we will inflict on Uncle Fred.

Soon, it became evident that the Living Will was working overtime trying to serve two masters.  People who cared about heroic life support were not really interested in the fiscal aspects of perimortal business dealings and those who were cared often felt ethically unequipped or empowered to make life support decisions. Time for another form.

Advance Directives take life support decision making away from the legal system and hand it back to the spouse, the family, a good friend.  The use of the form is good preparedness, we are told.  Make these important decisions in the cool of the day, not the heat of the moment, without the pressure from non- or less-involved family members.  And if you never need it, cool, you just tear it up.

But does it really work that way?

What's in a Name or whose zoo

Imagine waking up in a strange place, in a strange bed, surrounding by busy strangers speaking a language you don't understand.  It's no wonder that some people speak of a hospital experience as "scaring them to death".  Given the size of the city where I live, there is a pretty good chance of my doing just that.  My recent hospital stay illustrates this perfectly.  From the ER to my waking moments three days later in the Intensive Care Unit I have absolutely no memory.  A glance at the WhiteBoard posted to the wall in front of my bed, however, gives us hope that hospitals try to minimize this problem by helping patients begin to make connections.

On the Whiteboard  next to the name Arnold is the tile Wife followed by Carolyn and a number that is vaguely familiar.  With nothing else in my memory I could reasonably assume that I am a married man whose wife can be easily reached at the number listed.  Other names and numbers give me similar assurance that other friends and relatives are available.  Equally important are names of my care staff and consultants who are scheduled to meet today or tomorrow to resolve my case.

People walk in and out of my room, some without even introducing themselves or stating where they fit in my case.  All of them have a name badge around their neck identifying the person, the hospital, the department, and even the "rank" or type of employee such as rat catcher.  This indicates that this hospital takes security and confidentiality serious, an attitude that is increasingly common.   

This hospital is sort of stuck between time periods when addressing me.  Nurse and doctors usually call me by my last name as in "Good Morning, Mr. Loveridge." However, there is a trend that more and more professionals want to appear as the patients'colleagues and often call patients by first name.  Then the large number of suppot staff who will just "yes,sir" or no sir when I'm in earshot.  

Some ehinic groups have developed thei own name system which they use primarily with therapy.  I was called PaPa a lot, "Come on, Poppy", a name that I hope includes the respect due to seniors as much as it does age or familiarity.  Mr. Looooveridge, did you spill on the bed?"  "Okay, Honey, Let's walk a little."  Oh, Siiir.  You'll have to be careful tonight. Can my sweety be careful.  I just removed Sweety's catheter and gave Sweety a big sleeping pill."   Such people are interesting and talented but their speech pattern can be annoying .  

Shhhhh Hospital Zone

A relic of bygone days, the sign "Quiet Hospital Zone" would have been ignored or laughed at in my recent hospital environment.  Not only are noise regulations apparently something to be ignored, noise may be something that is used for "therapy".  How else do you explain the pervasive use of noise and noisy instruments in one of the most sophisticated work areas designed by man.

As you might expect, the equipment which has been around the longest such as the heart rate meter hias become so stereotypical that a boop-ping can't really be used for any other equipment.  Likewise a nurse's call button is modest and non-offensive.  (I was happy to find that call buttons were, in general, answered promptly by nurses who really took responsibility for satisfied customers.)

There were others, though.  One sounded like a WWII klaxon calling for overall movement to the air raid shelters.  I never did discover what it's purpose was in the hospital.  Another was a well intentioned attempt at adopting some of the Japanese ideas in public announcement.  Instead of a single ding or beep, a short 5 to 8 note tune is played.  If played infrequently this idea is a pleasant change.  However, played as frequently as I heard in our hospital, I began thinking up ways to murder composers.

Another particularly bad practice is having an alarm ring outside the area of interest.  Such an alarm annoys far more people than it helps and it contributes to the overall "temper" of the neighborhood.

But for absolute hellishness, I nominate the alarm that appeared to have one purpose and one purpose only - on-site status verification.  Taped securely to one of my fingers, it was easy to ignore - until you attempted to leave the room or even the surface of your bed.  Then, a very load horn declared your intentions to the world. Knowing their jobs and possibly even their lives depend on knowing where each patient is and that each is under control, the staff quickly block any exit attempt by  a patient to "get away".  This alarm was the first one I was hooked into on the ICU, the last one removed, and played a significant part in many of my dreams.

Restrain yourself

At times my recent hospital experience took on the feeling of a battlefield.  Sometimes it was a battle of wits while at other times it was more a  physical battle.  It was destined to be that way since my reason for coming to the ER in he first place was my struggle for a decent breath, one after another. But what surprised me was the early and then ongoing use of restraint.

I don't remember much of the admitting process.  I was spending most of my effort just getting  breath.  It never would have occurred to me that the restraint I was feeling was for my own good.

The first restraints were merely hook-ups, a connection of electrical pads, wires and monitoring machines.  With each new connection increasingly important vital signs such as blood pressure, pulse, body temperature , and blood oxygen level -  a vital link was forged between me and the hospital. At this stage, I could have severed the relationship with little pain to either party.

The second set of restraints were more invasive.  An IV (intravenous) line was inserted into one of the veins of my arm for ready access to my blood for injection of chemicals as well as collecting samples. A suction system humidified my breathing air.  A particularly noxious device known as the NG Tube (nasal-gastric) was inserted through my nose cavity assuring (and also monopolizing) an open path for delivery of food and medication. This act, also called intubation has a feel of compliance enforcement because you sure as hell don't want to undergo it more than once.  The coup de grace, an indwelling catheter was inserted through my penis into my bladder.  I could no longer pee on my own nor could I move very far from the collecting hose without serious consequences,

Restraints in the third category are definitely compliance-based physical devices - straps, jackets, mittens.  How little it takes to immobilize a grown man.  A simple 1 inch belt can reduce the range of motion from "independent" to "helpless".  These appear to be used mostly for physical manefestations of "bad dreams" or to prevent recurrence of equipment removal.  Verbal teasing and taunts were often used in conjunction with this restraint level.

Finally, there are chemical induced restraints.  This can be as simple as a sleeping pill and as extensive as combinations of blood pressure medications and psychosis inducing drugs.  We will spend more time on this more controversial category in later blog articles.

Can we talk?

I suspect that this series of blog articles will show up my ignorance and naivete as much as anything.  I just haven't had a lot of experience being in a hospital. A lot of what many of us "know" about hospitals is stereotype or script from TV and movies.  Not  a lot of people want to go through the whole inpatient process just to find out what it is like.

My latest hospitalization left me with the impression that these communication problems increase exactly when better communication is so needed.  This communications problem begins on the way to the Emergency Department (or ER) and continues even through a carefully planned discharge.

In my case, the drop in communication took a quick, drastic dive when the physician in charge decided (in consultation with my wife) that an intact airway for breathing was more important than a vocal cord system.  In a matter of milliseconds I went from a communicating, relatively equal partner in running this body of mine to a second-class silent partner now only peripherally involved with keeping my body alive while everyone else decides whether the task is worth the effort.

By the simple, quick procedure of allowing the doctor to punch a 1/2" hole in the front of my neck I lost the means to communicate with doctor, nurse, caregiver, children.  Judging from the reaction of those around me I also lost 50% of my IQ as whatever words I did manage to smuggle out were heavily discounted by outside visitors.  Now the expert on my body was my doctor, not the one who has lived in and (mis-) treated it for 68 years.  The expert on our family relationships took a sharp jump to my wife and my children leaving me in unfamiliar territory.  Even if someone insisted on hearing my side or my suggestions, the time delay reduced the value.  The topic I'm responding to is no longer current.  I open my mouth to contribute to a discussion but find it meaningless.                                                                                                                                                                                                                                                                                                                                                                 

Of course the effect lasts long past the decision point.  All of our family, friends, and business associates feel the difference. I fill up pads and pads of paper to continue to contribute in discussions finally stopping after I realize that many cannot understand my scribbling any better than my whispered mumbling.

Let's make it work this time.

Edward wrote this up so well, I'm just forwarding it on.  Love to all of you.
(Arnold -from his own bedside) 2/13/13

It is about time that I give an update on Arnold/Dad's status.  If I have forgotten anyone, please let me know.

As most of you know, Dad has been in the hospital for a little over a week for his second visit in a month.  We are not certain what is 'causing' the breathing problem, but for whatever reason he has not been able to breathe properly.  After some swallowing tests it was learned that apparently he is not able to swallow correctly and bits of various particulates will get into the lungs, which cause problems like pneumonia, not to mention the general difficulty of breathing the equivalent of a smoggy day.  To add to the problem, his body is not able to get the particulates out properly which is causing blockage and labored breathing.  Long story short, they put a tracheotomy in so that he can breathe better.  This time they are going to leave it in "indefinitely". [Arnold: I'm told that doesn't mean forever, just that the removal date hasn't yet been determined.]

Eating is now different as well.  Dad decided to go for a stomach 'peg'
rather than an NG tube through the nose.  Yes it is more invasive and more of a long term thing, but since prescription liquid diet is also now going to be 'indefinite', he felt that it was better than having a thing sticking out of his nose all the time.

All of this does mean that he will need 24 hour care now, 'indefinitely'.
Mom has hired a couple of women she has known from church to help out.  He will need help with feeding, suctioning and medications as well a minor help with things like dressing and the 'running around the house' kind of things that are hard to do when your mobility is limited.  There is a bunch of new equipment kicking around the house now.  We will probably have to give up the feelings of guilt over the amount of garbage that will now be generated (tubes, bottles, containers, wrapping, etc), but it is nothing compared to what goes on in the hospital.

Speaking of mobility, while his overall mobility is limited, once he gets walking he is a speed demon and is able to walk fairly well (using his standing walker of course), even better than the nurse thought he'd do.  As of the moment talking is a trick, but doable so long as he plugs the trach tube.  We are hoping for a special adaptor that will allow him to talk for freely.

Mom, the caregivers, Tiffany, myself and even Timothy all got trained yesterday on how to suction the trach, administering medications and food.
Timothy's words were "it was not that bad."  Pretty proud of my 13 year old for getting in there and trying it out.

Dad appears to be on a mood upswing as he is working towards coming home.
As you can imagine, coming home is always a good thing.  Only time will tell how things will be in the long run.  There are various treatments that may work to help him, but it will have be weighed against the usual things like time, pain, chances of success, invasiveness, etc.  You know, the usual.

So I think that is the latest.  Last I heard he will be taking home via medical transport or ambulance.  I think that is more of a CYA thing for the medical people; "Hey, last we touched him he had full medical support."  I think he should come home with the lights and sirens going and a blow horn going, "Now here this, ARNOLD HAS ARRIVED!"

Thanks all!

Ed

Back yet again

Yes, it's really true.  It's really me.  Arnold Loveridge, writing from the pages of Too Old to Know Better.  This entry and the next couple are likely to be really short as I try to figure out and report on what I've been doing the past three weeks.

First, current conditions and restrictions:

     Weight  195 pounds

      Blood Pressure:  136/76

      Pulse:  88

      Temp:  98.4

      No food, medicine, or water by mouth.  All by tube directly into stomach.

Major events:

Jan 4 caught serious chest cold

Jan 5 - 10 ups and downs with cold

Jan 11 - appointment with doctor, immediate admission to hospital

Jan 12 - Tracheotomy

Jan 18 - removal of Trache

Jan 19 - discharge from hospital (8 days stay)

Feb  4 - appointment with doctor, immediate admission to hospital
             intubated almost immediately, and re-trached by noon that same day. The PEG was surgically                                  implanted Fe 7 or 8.
Feb 7 -  Tracheotomy

Feb 13 - discharge from hospital (9 days stay)

Support by kids

Jan 22-26     Lee

Jan 27 – Feb 2  Natalie

Feb 3 – Feb 8   Jessica

Many, many      Ed & Tiffany

Feb 8 – 10    Steven & Lisa

Many, many, many    Carolyn

How to Lose Two Weeks and Gain Your Life

Initial report

A week ago Thursday (January 3rd) Arnold came down with a bad cold/flu. He felt fine in the morning but really punk by the end of the day. He spent most of several days in bed and had a raging sore throat, a fever on several days, lots of phlegm to cough up, and ragged breathing. The other symptoms seemed to get a little better but the breathing difficulties became worse. Last night he got up several times during the night, tipped up the bed more, turned on the fan to try to get more air, and finally got up for the day about 5:20 a.m. I talked him into letting me take him to the doctor. We went to the doctor's office an hour early because his breathing was so labored. I figured it was better to have a medical emergency at the doctors office rather than at home. Chest x-rays indicated pneumonia so I took him to Kaiser Morse to the emergency room where they admitted him immediately. At the beginning of the day I thought they would give him a nebulizer treatment, he would be better and we would come home. In the emergency they did the treatments you typically do to open the airways, that helped a little but not much, they did a constant stream of oxygen so his blood gas was good but he was still extremely labored in his breathing. The administered epinephrine and that didn't do much. The finally had to take him into surgery to put a tube down his throat. Even that didn't go easy - the first one they did through his nose came dislodged so they ended up taking him back into surgery and gave him a tracheotomy. He is now in the intensive care unit at Kaiser Morse Ave. 

Much to the surprise of all who saw me go into the hospital two weeks ago, I have returned, suffering but not defeated, hurt but not mortally wounded. I was so beat-up in this latest tussle with Mother Nature, (or archangel Gabriel if you prefer) that I'm seriously going to cut back my activities. I'm just now determining the extent of my damages. The worst problem I had was an obstructed airway from swelling and inflammation. The blockage of this airway led to one or more incidents where I was literally dying from lack of oxygen. To allow me to breathe the doctors put a tracheostomy into my neck. I also had pneumonia in my lungs.

Several days I drifted into and out of audio and visual hallucinations and confusion. This was exacerbated by being unable to talk because of the trache. Family members and medical staff took turns (and risks) to reduce my self-injurious behaviors. Even while Carolyn was cajoling my doctor to let me come home a week ago, I was trying to look into the merits and methods of patient compliance systems, a trick (had I succeeded) that almost certainly would have lengthened my hospital time.

At this point, I am gaining my physical strength and plan to be the healthiest I’ve been for years. The trache has been removed and the hole in my throat is healing rapidly. My blood pressure and blood chemistry are in good balance. Indeed, MY biggest complaint is that everything I eat tastes so bland or “off”.

I try to get outside 30 to 40 minutes each day, I try to talk and use the computer an hour a day, and hope to stay involved in groups that I have participated in. At least initially, I'll volunteer for times when my failure to show up won't mess up other people’s schedule.

Many of you have written letters which are greatly appreciated.  I'll probably not respond as quickly as I used to but I will try to respond.

Arnold